Wednesday, May 27, 2009

I don't consider myself a huge "worrier". I don't carry my stress over Simon for too long. I feel pretty good about how well I am handling all this.And Doctor Gleghorn makes me feel like a worry wart.I think that's awesome!Simon got winning marks for his GI visit. Here are some highlights

We are no where near talking about a Nissen for him. He would need to be vomiting up blood, in terrible pain while barfing, and/or failing to thrive. Simon has never spit up anything other than formula (occasionally a little neon green bile), he has around a three second bounce back after blowing chunks, and failing to thrive...? Please. Have you seen the little chunker lately. Dr Gleghorn actually put him a slightly lower calorie daily intake plan.

We are switching over to an age appropriate formula that, by all accounts, should be covered by our insurance. We'll see if they go for it without a fight and a ton of red tape (that's just what I've heard from a couple of other families- thinking optimistically though)

We are cleared for swimming!! I just finished writing what I think is a heck of an application for financial aid to the Downtown Berkeley YMCA. I included two pictures to really work their purse/heart strings. One from August 2nd and one from his birthday. I'm thinking they might actually pay us to come to the Y. Naaaah, but I'd take a nice scholarship so that we could go swimming a couple of times a week :-)

Tuesday, May 26, 2009

It's hot today.During the afternoon we (meaning Simon) stripped down to just a diaper and spent most of the post nap afternoon hanging out as such. At one point Simon is across from me playing with his singing cube. He's standing at it and I can only see him from his belly button up.

I see my son's chest. I see the small amoeba looking scar from his broviac line. I see his blue varicose veins from who knows what. I see his beautiful chunky little baby/man boobs.

And I see his heart.

No, I have not developed x-ray vision (that would not be my super power of choice anyway) and no, Simon is not breathing or working so hard that I can see his chest heaving or heart beating.

But I see it. I see it in my mommy/minds eye. It's big and red and beating faster than it should but it's there. I see it. It fills his chest cavity. I see it working for him. It's vibrant and shiny and it's his heart. I love that little but too big organ.

I love it with all my heart.

Oh yeah, and I'm so frikkin' tired of vomit.

We go to see the GI doctor tomorrow and will hopefully have some sort of 'next step' for Simon in regards to his throwing up. It's not about weight gain anymore. The little chunker has more than enough to lose.

It's about what all the throwing up is doing to his poor esophagus. He's clearly conquered any sort of oral aversion, even his swallowing is getting better and better. Even while simply playing with food, a gag/heave won't deter him from bringing whatever it was that he was just playing with back to his mouth.So what will it be. More medication. Are we at the Nissen stage?(a nissen is a surgical procedure where a part of the stomach known as the gastric fundus is wrapped around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.)What!? I don't know. More surgery?!! Hard to think about.

Otherwise he's doing so well. He's put on more than enough weight. He's making great strides with food orally. He's pulling himself up on just about anything (including Roxie!) and he's starting to make new and exciting sounds (Fsshhhhh anyone?)The other morning he actually pulled a book out and started turning pages on his own.

He is amazing. Doesn't let you forget it either.

Jaime here:This weekend was so mixed for me. I was very grumpy for the first 2 days and then we had a great Monday with a BBQ with a bunch of friends. I was grumpy until I had an epiphany on Sunday evening.

This Memorial Day weekend was the 4th anniversary of Laura's traumatic brain injury.

The actual day is May 31st, but it was Memorial Day 4 years ago. Laura and I talked about my bad attitude Sunday night. I remembered that my predominant emotion about the accident, after the fear mostly subsided, was anger. I was so angry to have to be going through something so traumatic by myself.

It never occurred to me, prior to her accident, that her not being "present" was a possibility. I'd been so proud of myself for not picking another depressed substance abuser, as had often been my pattern. I had finally picked an incredibly present, caring, emotionally healthy woman, finally. And then, I had the most traumatic event of my life and she wasn't there for me.

Intellectually, obviously, I knew it wasn't her fault, but goddamn was I angry! Our friends were incredibly helpful, supportive and loving, but my root system was suddenly gone. My very best friend, the one I could tell anything, the one I could be vulnerable with, was M.I.A. And, not only was she not "present", she was helpless (for a while, anyway). She couldn't be left alone, she couldn't drive, she couldn't work and she had no affect. No anger or sadness, and also no interest in or excitement about anything. Oh yeah, and we were due to get married in 5 months. How romantic.

Laura slowly recovered, returning to work 9 months after the injury and was *mostly* back by a year post injury. Our wedding was amazing. Still, our first year of marriage, that was supposed to be this blissful, easy, fun year...in a word...sucked. I was traumatized, my wife was slightly depressed and frustrated and our power dynamic was all out of whack from me having to take care of her. It took me to the end of that year to realize how angry I was, about all of it.

I have mostly worked it out but evidently the emotions come back now and then to remind me how hard that year was. I often pretend that hard stuff is water off my ducky back, but really, some of it really sticks. As it should.

I say this all to say...on Sunday I realized why my experience with Simon's illness feels more bearable than I would have imagined. Because I have Laura at my side, 100% present and going through the same hell, in the same sort of way that I am. I felt SO alone when she had her head injury, but I don't think I've ever felt alone with Simon's illness. Part of it is our incredible network. (Thank you!!!)

But a very large part is that I have my roots back. We are two strong trees standing tall in the face of the absurd, roots touching beneath the ground, instead of one lonely, spindly, dazed sapling bent over looking at her life's love sticking out of the ground, parts going this way and that, in disarray.

Laura's love, support, listening ear, ability to express emotion and ability to be present has made the unbearable bearable. Unconditional love by a healthy person is seriously the best medicine. You should go out and get you some. Seriously.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com